Chapter Twelve: What is “wrong” with me?

Oh, wow. Have I got some news for you. Just two days ago, I did something brave. I let the cat out of the bag to my in-laws about my Asperger’s Syndrome after all these years of them knowing me and not being aware of it.

Now, I can’t say that I was brave enough to actually do it directly or attempt a verbal explanation and discussion with them. Oh no, doing it with words would have been far too scary for me. But this time, I had a large chunk of this book written, the backbone story of my life. So I printed it out—then forty pages—and handed it to my mother-in-law (with my fingers secretly shaking). She and my father-in-law were holidaying in Houston at the time and had been staying in a hotel nearby, allowing her to visit us frequently.

I told my mother-in-law to read the letter when I wasn’t around. I said that I didn’t want any detailed feedback and that I needed to finish this process on my own and from my own perspective, though, truth be told, I was probably more scared of negative feedback and perhaps afraid to see her reaction. So she took it away with her.

After handing it to her, the stress set in a little. It’s hard to help doing that Aspie thing of playing a worry over and over in my mind, stressing about the outcomes. This is a big deal to me, after all, exposing myself to the people who form the permanent core of my life. (The boys and their grandparents have always remained close.) Will it be acceptance or rejection? I know it will have made my mother-in-law emotional. She’s the type who feels things deeply and would probably react a lot to each and every experience I shared.

I started going through possible ways she and my father-in-law could respond. Was I going to get a talk on how I was “viewing everything wrong” or how I “need to change X and just get in there and do Y and stop overthinking it”? I guess I expect these sorts of comments, because they’re the usual reaction I get from people when I make little hints that something might be hard for me. People so often downplay my issues. “Everyone else deals with Z, so you should be fine dealing with Z too.” “Nobody likes working, but we all do it.” So that’s what I waited to hear.

I thought about how one thing I particularly hate is the line “toughen up” or “harden up,” which, fortunately, I haven’t encountered excessively but have seen so often used on other people with little insight or real understanding. I wonder why the speaker assumes they know what that person is really going through to judge in this way. How could they possibly?

If the world’s issues were as simple as changing a person’s attitude, then counselors and psychiatrists would be out of business. Of course people don’t just choose to be depressed, anxious, or whatever else they’re dealing with. They’re fighting against these things. And it bothers me that people retort like that, even in ignorance. It’s one of the reasons that speaking up for people like me can be so confronting.

Another thing that went through my mind is how much I dislike it when adults take it upon themselves to coach me on “fixing” my behavior (when I really just came to them wanting someone to listen, not for help).

I had a lady do this to me once. She would describe to me how I was doing specific things wrong. I should change to become more like this instead; i.e., neurotypical. “Try doing this. Try saying that.” More and more until my real self was almost unrecognizable. “That’s better. You seem sort of neurotypical if you do it that way.”—and completely unlike myself—”That’s still not quite good enough, but it’s an improvement. I’m telling you these things to help you fit in better.” As if I haven’t already changed more than a person should ever have to.

In my head, I get agitated when I hear talk like that, and I always want to reply, “Enough! I don’t want to change any more. I’ve almost lost the real me in doing it, I’m bending over so far. I’ve spent so much time now trying to undo the damage that comes from self-denial and trying to be something that’s not me, and I’m finally happy with the direction I’m finding.

“The last thing I need is people telling me I’m not good enough as I am and should bend over backward to fit into their stereotypes. What I really want now is to reverse the process. Let my quirks come out. My real self is fun and humorous and cheeky. Why should I shut that down? Why can’t people learn to enjoy that little bit of randomness that is me? I think it’s about time the world started to bend back a little and show some acceptance of who I am. I just want to be me.”

But unfortunately, on the spot, I don’t usually have the words to express these sorts of thoughts.

Anyway, when my father-in-law rang in the afternoon to say they would be coming around, it sounded a bit to me like, “Okay, I think we need to talk,” (or that’s how I interpreted it) and I braced myself for a potentially uncomfortable discussion.

As they headed over, I contemplated how I didn’t want to engage and started to run through my side of the imaginary conversations in my head. “I don’t want advice. I don’t need to be helped. I’m fine the way I am. I don’t need other people to try and ‘motivate’ me or push me to go for things. I already push myself hard enough…” But it turns out, I didn’t need to say anything.

When my mother-in-law came over, she handed me a letter and said she thought she would respond like for like. And then they took Isaac (my older son) to the park and disappeared for a while to give me time to read. A letter! What a relief! All that stress and defensiveness for nothing.

Looking back, I wonder now why had I been so ready to argue? It’s interesting that I made the automatic assumption that I need to debate to justify my views and people won’t naturally respect my opinions and feelings. Being me and explaining myself has typically been so exasperating. Of all the responses I’d thought through, the one thing I hadn’t predicted was for them to be accepting of what I’d written! Heavens. What was going on?

The letter read:

	Dear Michelle,
	Thank you for sharing your notes with me. I am pleased you trusted me with them. I loved your honesty. They explain clearly so many things to me, because, of course, like you, I have wondered over all these years why can’t we talk/communicate more easily? What is wrong with me or her? To be honest, it is a relief to know what your condition is and that you are embracing it and in learning to understand it developing the positive side to Asperger’s. I hope in the future you will teach me how to communicate with you in ways you find comfortable. [Some personal things.] Know that you all have our love and support.
	Celia

What a good reaction. What an unexpected reaction. Does that mean that I actually got through for once in a way that didn’t just generate misunderstanding, judgment, and/or criticism? After all, helping others to understand what Asperger’s really means was the whole point of the book. Could I actually be achieving what I aimed for here?

I was thinking, shortly after reading it, how happy I was to see the words “explained so clearly.” I was understood! I’m actually starting to entertain the idea that I could be successful in my writing. What a great feeling! I’m motivated to write more. I want to change the world and alter society’s view on Autism. I want people to “get it.”

But enough getting carried away. While I’m talking about this letter, it raises another topic that I want to address, and please don’t take it as me misinterpreting the letter. I understand that the letter was positive and kind and that my mother-in-law was being lovely about it all and I don’t mistake the meaning. But it does raise the question of what is “wrong” with me.

If my mother-in-law views it that way, then I’m sure a lot of neurotypical readers will probably have similar reactions. I must have some failure or disability, right? I mean, that’s why I was given the label “Asperger’s” in the first place. The problems I am having have to be due to my own failings. My “condition.” It’s what is “wrong” with me.

What I really feel the need to say here is that there is nothing wrong with me. I’m just different. And any difficulties I have are the result of trying to live in a world where everyone around me is so different from me, not because I myself am faulty. I think Tony Attwood hit the nail on the head when he said, “People don’t suffer from Asperger’s Syndrome. They suffer from other people.”

I’m not “wrong.” I’m everything I’m supposed to be and more. But both the social world and the business world that I live in aren’t set up for someone like me. I’m the proverbial square peg trying to fit in a round hole, and I can’t function effectively like this. I have so much potential to be useful, creative, even ingenious. The world just has to find a way to utilize me better.

To come up with a rather bizarre analogy, as I often do—my mind is strange and visual—imagine taking a pack of dogs and adding one chimpanzee. Is the chimpanzee faulty because it’s not acting like a dog? Is it a retarded dog or a dog with disabilities? No, it’s just a chimpanzee. It isn’t supposed to act like a dog. But if we leave the chimp in this situation indefinitely, it’s going to have a pretty hard time living in a place where status is determined by the ferocity of one’s bark.

I mean, it’ll probably take on dog mannerisms and even learn to bark to fit in. It’ll get better and better at this with time. But it’ll always be a chimp, and it’ll always stand out as different. But who’s to say that being a dog is better than being a chimp anyway? The dogs are the majority, but that doesn’t make them superior.

In a similar vein, who is to say that being “neurotypical” is superior to being an Aspie? Some people—Einstein, Isaac Newton, Bill Gates, and many other famous and/or highly successful people—are suspected to be Aspies. If you Google the topic of famous people with Asperger’s, you’ll see that the list is lengthy.

Heavens, I’ve even seen some people posting on Aspie forums how they think Asperger’s is the next step in evolution. An advanced form of the human race. I wouldn’t go as far as to say that, but I do think we’re at least a side-step. And I wish people weren’t so quick to assume we must be lesser.

To share a joke that I once found online, here is an article I once saw about Neurotypical Syndrome (paraphrased, as I couldn’t find the original). And please don’t take this to be offensive in any way. It isn’t supposed to be a dig at typical people, just a document to highlight the point that if you look enough, you can find weaknesses in any group where there are clear differences between people.

	Neurotypical Syndrome:
	Neurotypical Syndrome is a neurological developmental disorder characterized by irrational behavior, extreme obsession with social conformity, and a strong intolerance to seemingly minor differences in other people. Neurotypicals often insist in following unproductive and sometimes even self-destructive behaviors and rituals and may passive-aggressively compete with others with whom they should be cooperating. Neurotypicals may find it difficult to be alone.
	In the learning environment, people with Neurotypical Syndrome can display extreme deficiencies in logical thinking, concentration, and problem-solving ability. They often resort to wildly emotive and unsubstantiated analogies to prove a point, as opposed to being able to focus on factual evidence and logical discussion.
	Neurotypicals may have difficulty with direct communication and are more likely than regular people to tell lies. Sadly, as many as 994 in 1000 people suffer from this condition[20].

I guess as an Aspie, I found it a little comical. You see, it’s all about perspective.

To tell a somewhat amusing story, I had an odd experience once where I got to see just how much people assume the label “Asperger’s Syndrome” meant I must be somehow “a little defective.” Shortly after receiving my diagnosis, I began to seek out Aspie meetup groups online in the hope of finding information and connection.

There weren’t many adult groups around where I lived, but I did find and join one local group for parents of children and teens with Autism or Asperger’s, and I decided to turn up to one of the events at a children’s bouncing castle play area. I may have been the Aspie, but I brought Isaac, my older son, along to join in the play and socialize. I was noticeably pregnant with Trent, my second son, at the time.

During the group, I was asked at one point by a parent when I’d found out that my son had Autism, and I decided to reply directly that he didn’t (at least to my knowledge) and that I was the one with Asperger’s Syndrome. After all, I thought I might as well be honest with the group if I want to find understanding. It was the first time I’d ever walked into a group being “openly Aspie.” The group hadn’t picked it up at all before that point.

The ladies responded with fascination and asked a few questions, which I started to answer, but I was shortly interrupted by Isaac and had to go rescue him from some play equipment. When I came back, I recall that one of the ladies was talking about me. She was saying, “Isn’t it amazing to see one of them with a husband and children? To know that they can have kids or that they could even want to get married and have children…” She continued speaking in front of me as if she didn’t expect me to think much of it. It was the most bizarre experience of my life.

I thought to myself, “Um, hello! I’m standing right near you, and I can hear what you’re saying.”

“One of them?” All my life, I’ve been considered “normal” and have been expected to behave accordingly. I’m as intelligent and capable as the next person, and if that person is not extraordinary, probably more so. I’ve never been called a “one of them.” What an odd thing to hear!

Of course Aspies want to be in relationships. I don’t know one who doesn’t, although some may be a little jaded from relationship failures. And yes, some of us do and some of us do not want children. Some of us even have them! I did, and I know a few other Aspies with children. We’re not non-human!

I should probably stop to clarify that I wasn’t angry from this encounter. I was just baffled by it. Is this what it feels like to be a labeled person? To be singled out as being different? It occurs to me that this isn’t dissimilar to the feeling that a thin, attractive person might get when they dress in a fat suit to experiment with how differently the world treats them—the shock of experiencing being perceived as someone different and how it changes the way you’re responded to.

Of course, no one was actually being mean to me in any way, and I’m not upset, but I definitely did get a feeling of being alienated and regarded as not one of them. What a bizarre feeling!

I guess this sort of response shows me the level of misunderstanding that there is out there in society. Perhaps this was a mum of a severely Autistic child. If that were so, then relationships and family may not be something that they can hold strong hopes for. But it still surprises me that people know about high-functioning Autism and Asperger’s and yet they assume that there’s still a giant unfillable gap between this and a “normal” person. And these are the parents, the ones who are supposed to be more educated on the syndrome.

I didn’t go back to that group. It felt a little too odd and uncomfortable for me. Wouldn’t you feel strange too if you were labelled as “one of them”?